I had a comment the other day that said that they thought I was missing me, to those who haven’t been through chronic illness that will sound like the maddest statement, but it’s a reality for far too many of us. When first diagnosed, one of the things that you go through is grief, you mourn for all that you have lost and will never have and it is as real as the grief that we feel when someone we love dies, as in so many ways, that is just what we have done. Back in 2013 I wrote a post about the steps of grief that comes with chronic illness and how I handled it in those early years and just how it doesn’t have a shut-off date, it lasts as long as you need it to. All too often though, we don’t recognise our grief or even the fact that we are in need of another spell just spent putting behind us what needs to be packed away, simply so that we can move on again. It is actually one of the pitfalls of blogging as I do, as I often reopen things that some might say that I would be better off leaving behind. That in itself is a huge mistake, if something has reopened a soar, be it at your own hand or simply something you saw on TV or read, it has to be dealt with, it won’t just quietly put itself back in its box and go back to sleep until you put in the work.
Being housebound has a habit of putting everything under a microscope, it doesn’t matter how small and unimportant something might seem to everyone else if you are trapped with nowhere to run, those small irritating things have amazing power to grow and grow and grow. Last week the catalyst was the pain, but what was getting me down was how useless I was feeling as it didn’t matter if it was just picking up a glass, it was pushing the pain levels. I couldn’t do anything about it, I couldn’t go out and do something to take my mind off it, all I could do was sit and make it worse and worse in my mind not just my body. I still can’t do anything, but what has changed, is I took a couple of days to not just feel sorry for myself, but once again I grieve over my loss of my physical ability to lead even a physically limited life. When I wrote that post back in 2013, I thought that the worst of it was over, that I had said goodbye to everything and that the only major hurdle ahead of me would be the transition into being bed bound, I was wrong. I guess I had forgotten all the steps that happened from diagnosis to housebound and I wasn’t allowing in any way that there was a strong possibility that there were just as many steps from housebound to bedbound. Once I had had time to think after I was told that I had PRMS it appeared to me that there were four major points in my future, points that would take a huge adjustment. The first was having to use a wheelchair, as I said before that is something not to be fought, I made that mistake and put myself through hell for no reason and I honestly wish I had given in a lot sooner. The next was housebound, that one scared the hell out of me, but in my post on grief I have explained why I found it easier than I ever thought and how I myself took steps to make it so. The third is bedbound and the fourth and final death, or I should say the stage when death is imminent, I didn’t realise that there were so many tiny hurdles along the way.
I don’t know why, but I never once allowed in my head to see that losing my mobility was actually not the worst thing that could happen and that the steps from housebound to bedbound would be quite so many or ever so painful. I thought that it would be a bit like the progress from walking to a wheelchair when for me it was increased fatigue that eventually takes my legs away from me. It made sense that it would be that growing fatigue that would force me into being bedbound and it still might well be, but nowhere on my scale was there anything about my internal nerves shutting down making both processing food and breathing beyond just difficult. I had never accounted for such things because I never knew they could possibly happen. I grieved when they told me I had COPD and that the mechanical side of breathing was shutting down and is probably the thing that will eventually kill me, of course I grieved, but grief doesn’t prepare you for what goes along with it. Maybe I just didn’t want to know and not thinking the whole process through was my mind protecting me from the reality. The slow downwards slope of the whole process of my bowels shutting down was another thing that I didn’t really think through to its final conclusions. I still had this mad idea that a doctor would fix it, which is something rather stupid for someone who has had nothing cured by a doctor for years.
Over the last four months my bowels have almost shut down completely, in the process they have been playing hell with my lungs. I never foresaw the pain, the distress or the simple tumour that living in this way would bring with it. I never once even dreamed that I would be still just housebound when my body got to this point, somewhere in the back of my mind, I saw this all as a long way into the future, but it’s not, it here right now. For four months, I have been kidding myself, playing games in my head that all I had to do was work with it and life would return to some form of normality once they brought out their wand and waved it over me. Every breath I take is telling me that that really is nothing more than a dream, I spend every day with bands locked around my ribcage and lead waistcoat that is being slowly tightened from my shoulders to my waist and when I lie down crushes me. At times, my breathing is so shallow that I fear I am not getting enough oxygen, but when taking a deep breath it sends pain not just through my upper, but also my lower abdomen, breathing becomes a difficult choice. That is physical, but the mental impact of feeling yourself dying a little with every day, is hard to accept and harder still to explain to others. Somehow, I have jumped forwards and combined two totally different time phases into one and the mental impact of that is almost as painful as anything my body can physically create.
I am missing me, but not the old me, I missing the “me” that I thought I would be and the way that I thought that “me” would live. I had created a dream to replace the on I had prediagnosis, a dream that suited me as it was gentle and it was forgiving and yes I needed to grieve the loss of that dream. Reality is a cruel and hard thing to face up to and if there is one thing that can make us face it, it is illness. My reality isn’t a gentle thing any longer, it is a violent and aggressive monster and like all monsters, it needed facing and bringing down to size before it took over everything around it. I am adjusting, I am slowly rebuilding and accepting what I have been blinkered to and it’s not an easy process, so I don’t promise I will be bright and breezy or that I won’t at times moan like hell, but I have to get this sorted as I am not ready to roll over and give up, not yet anyway.
Read my blog from 2 years ago today – 5/05/13 – The Personality Factor
I have managed in the last couple of days to make a complete mess of my systems for twitter post in the last two days, one day would be bad enough but two it unbelievably stupid of me! I can’t think how I didn’t notice or how it started happening, I have had this happen on a smaller scale in the past but this was a mega mess up which won’t clear the system until midnight tomorrow. I know everyone makes mistakes but……